Calling Kids With Disabilities 'Heroes' Can Be Damaging, Says Parent

I'm Michel Martin, and this is TELL ME MORE from NPR News. They say it takes a village to raise a child, but maybe you just need a few moms or dads in your corner. Every week, we check in with a diverse group of parents for their common sense and savvy advice. And if you're a parent, you've probably enjoyed moments when your child is praised for something - a teacher calling her smart or another mom saying he's so well behaved.

Mom Sarah Sweatt Orsborn has gotten a lot of praise for her daughter who has a developmental disability. And she says that kids like her daughter are even referred to as heroes. But Sarah says that that label could be doing more harm than good to her daughter and other children like her. She wrote about all this in a piece called, "My Child With a Disability is Not My Hero," for the Huffington Post. And she is with us now to tell us more. Welcome, thank you so much for joining us.

SARAH SWEATT ORSBORN: Thank you for having me.

MARTIN: Also with us is Eliana Tardio. She's a mom of two with Down syndrome. She's also a blogger for parenting - the parenting site Babble.com. And we thought we'd call her for additional perspectives as well. Eliana, thank you so much for joining us as well.

ELIANA TARDIO: Hi, thank you for inviting me.

MARTIN: Sarah, you have twin daughters, almost two, and one of them has spina bifida. Do you mind just - briefly just telling us what that is for people who don't know?

ORSBORN: Sure, it's actually the most common permanently disabling birth defect in the country. And it's basically that her spine didn't close all the way when she was very early in fetal development. So part of her spine and nerves were exposed when she was born.

MARTIN: So one of the things that you wrote in the piece that got our attention, you said that, you know, the tendency of kids parents of kids with special needs and disabilities to say their kids are heroes makes me deeply uncomfortable. You say, on the one hand, it makes perfect sense. We see our kids go through so much more than most typical children deal with. We're impressed by their resilience, but you also say that this is a problem. That this is something that you don't see that there's any malice there. It comes from a good place, but you say that there's a real downside to this. What is it in your view?

ORSBORN: I think it still makes our children other than just typical kids, which, I mean, my daughter has to work harder to achieve things like mobility milestones. But I still see in her the same effort, the same determination that I see in her typical twin sister. And I think that that's what I want people to know about a child with a disability, is that they're still, at heart, children who really want to achieve and explore and try new things. And that's not different at all.

MARTIN: Is there something in particular that made you want to write this piece, that something that kind of push your buttons that said, you know what? I've got to get this out there. Was there something like that?

ORSBORN: I've become more and more involved with other parents, and so thankful for it because I've learned a lot of, you know, just little tips about dealing with specific things with the disability. But I see more and more the way parents talk about their kids. And so one day, a friend and I were talking about it. We both have toddlers with spina bifida. And we both expressed that we were frustrated with people constantly referring to their kids as angels or heroes when we just see our kids as kids.

MARTIN: Eliana, what about you? Has anybody ever called your kids heroes, and what do you think about this?

TARDIO: Well, I mean, my kids, you know, they have Down syndrome so it's pretty common to hear, you know, people calling them angels. And I would like to say that, you know, it is common, and I have been there, you know. When they were born, I didn't understand why my kids were born with Down syndrome. So at the beginning, I used to believe that they were angels. And it was my way, you know, for protecting myself, and finding an answer to the common question, why me. But eventually, you know, as a parent, you evolve and you realize, you know, that they are kids as anyone else. And as Sarah is telling, you know, it is true, you know, that we have to project that to society if we want them to be included and respected for whom they are.

MARTIN: Well, one of the points you made in your piece, Sarah, is you say that when we put them on pedestals and call them heroes, we make them something other than human beings. We give them a standard that, at times, may be hard for them for them to live up to.

They might not always feel like being a heroic. Sometimes they might just want to be kids or people or frustrated and fed up and over tired and hungry and in a bad mood and all the other less-heroic stuff we feel from time to time. So, Sarah, I wanted to ask you, have you ever seen that? Have you ever seen people kind of disappointed that your kids weren't living up to their image of perfection that they somehow feel they should have because they live with a disability?

ORSBORN: I think most of the people in my personal life are - have been extraordinarily supportive. But I just hesitate to call Claire a hero because say we've just been in the hospital and had a surgery, and she's feeling tired and in pain and crying. That's OK, and I want her to know that she doesn't have to be a tough guy or be a hero in that moment. She can just be a little girl. The same as when she achieves a milestone. I want to be able to cheer that specific milestone, and not credit it to some larger hero thing. It's just one thing that she worked hard for.

MARTIN: Eliana, what about you? I mean, I know your girls are little, but there's - do you ever feel that way that people expect your children to bless them in a way, if I could use that term...

TARDIO: Yeah.

MARTIN: ...That they are somehow kind of - this idea that they are somehow here as angels.

TARDIO: Little Angels.

MARTIN: They are there to bless you with their presence. They are there...

TARDIO: Right.

MARTIN: ...Somehow to improve your life as opposed to just live there own.

TARDIO: Yeah. It happens a lot when they grow because my son is going to be 10 and my daughter is going to be 7 by the end of this month. So you can see that at school, you know, that sometimes some teachers, you know, they have that tendency to idealize them, and feel that they are going to be so good, so sweet, so perfect. And in my case, you know, my daughter is a typical girl, you know. And she has, you know, tantrums and bad behaviors.

And my son, he is, you know, a very loving and caring child, but it's not because he has Down syndrome. It's because that's his personality. So I'm, all the time, educating about that because I don't want to give the credit of whom they are to the Down syndrome label. You know, they are who they are because we have been always raising them with love, you know. And that's what they project to others. It's not about Down syndrome.

MARTIN: If you're just joining us, we're talking about labeling disabled kids as heroes. Our guests are Sarah Sweatt Orsborn. She just wrote about this, and Eliana Tardio. You know, it's - Eliana, you know what? This reminds me of a poem by Nikki Giovanni that I once read where she said, you know, I want my son to have the right to be average. You know, it's an argument that - you've heard kind of other minority people in this country make the argument that somehow they exist to improve other people as opposed to live their own lives.

TARDIO: Yeah.

MARTIN: That they are somehow supposed to be kind of the moral focus or center or - and they may be that. But...

TARDIO: Yeah.

MARTIN: ...I think your argument is they shouldn't have to be that. I was wondering - and I'll be interested in each of your perspectives on this, and, Eliana, maybe you first, why do you think people think that? I mean, where does this idea come from in...

TARDIO: You know, it comes, you know, especially from society when you receive a child with a special need. You know, it's like the consolation prize that they come to you telling you, oh, my God you are so blessed, you know. You should be someone special for God because he's giving you an angel, you know. It should not be like that, but maybe at that moment when your child was born, you know, you feel good about that. But eventually, you want your child, you know, to be a child, simply a child.

You don't want people to label your child, you know. And the problem with parents and with society is that sometimes they feel that if they call them good names, like an angel, like a hero, they are going to be, you know, like being nice with them. But it's not right, you know. They are kids, and they should be always kids. And yes, they bring, you know, so much, you know, special lessons to you as a parent. But it's not because they have a disability. It's because every child will bring you lessons if you love your child and you are ready to learn from your child and teach your child to be a good person.

MARTIN: Sarah, what about you? Where do you think this notion came from?

ORSBORN: I think it comes from our need to find reasons for why children suffer or why children have to deal with things like disabilities. But I want my daughter to know that she will be an inspiration to people if she is because of her heart and her mind and her ideas. The same as my other daughter. If she's an inspiration to anyone, it would because of her heart, and her mind and her ideas and the way she treats and interacts with people, not because of a disability.

MARTIN: Sarah, just playing devil's advocate for just one second, though, because, you know, parents of kids with disabilities already - I mean, you know this better than anybody, that there's so much fighting you have to do to create space for your child in the world. And in some cases - it also depends on, you know, where you live. I mean, some places are better than others at offering educational opportunities that are appropriate. And also the level of acceptance is different in some places, you know, or others. And so I wonder whether calling the child a hero, in a way, does provide kind of a cloak of armor.

Could it be that to say that, you know, this you know - you know, whether it's right or wrong, but just to say - you know, just in the same way that I'll just - this is a poor example. But that, you know, a lot of times, black people complain about the fact that their child is a minority in the school, everybody thinks their child can breakdance, you know, or - you know, or play sports or something like that. And you're like, really, no. Actually - but that even if it's wrong, it does offer some space, you know. It offers some status that just may create an opening for more acceptance. Any thought about that?

ORSBORN: I can see how it would be helpful for a child to maybe see themselves that way because they are going to have to deal with marginalization and, you know, not being treated equally when out in the world. And so it might give them something to hold onto like, I've got this superhero ability. I've overcome so much, I can handle this kind of a thing.

MARTIN: What do you think? Does that work with your kids yet - or they're so little it's hard to know? It's hard to know whether that...

ORSBORN: Right.

MARTIN: ...Provides that armor. Well, Eliana, what about you? Does that provide any special...

TARDIO: You know...

MARTIN: ...Armor or any special boost to your kids to say, you know, I am special...

TARDIO: I think, you know...

MARTIN: ...I have, you know.

TARDIO: As parents, we all want our kids to be special, to be treated, you know, like wonderful kids all the time. But it's not right, and it also brings, you know, to another level when you are the parent of another child because people feel that they are special, that they are angels, that they have superpowers and they expect the same, you know, for you as a parent. So sometimes it is hard because people comes to you and, wow, you are the mother of two kids with Down syndrome. You should be so special and wonderful and caring and sensitive. And sometimes, I'm not like that, you know. Sometimes, I'm feeling good and doing good stuff. Sometimes, I'm not. So it is not right, you know.

ORSBORN: And it doesn't take a special person.

MARTIN: Go ahead, Sarah.

TARDIO: No it doesn't.

ORSBORN: It doesn't take a special person to love kids with disabilities. I mean...

TARDIO: Right.

ORSBORN: ...You just love them because they're your kids. It does - I mean, because it comes naturally to you.

MARTIN: Sarah, final thought here. And thank you both, again, for - you know, you've been sharing a lot of wisdom with us throughout. Do you just want to leave us - Sara, leave us with a final word of wisdom since you kicked this thing off and wrote this piece?

ORSBORN: For the first - I'm just at the very beginning of this journey. My kids are two, and we just got started. But I just think that the thing I want to protect for both of my kids is their right to have a full human experience and to be themselves and to have their thoughts and their feelings, whatever they are.

MARTIN: Eliana, what about you?

TARDIO: Exactly the same, you know. And it's so good that Sarah understands this from the beginning, you know, because sometimes it takes, you know, a lot of time for parents to understand this. And it's important to accept your child, you know, being who he is first. And every child is a child first, and that's the most important. And as Sarah said, you know, we want our kids to be loved and accepted by anyone, not because they are special or we don't need special people to like them. We want everyone to like them and see in them, you know, their gifts. And also, you know, that they are real people that make mistakes all the time.

MARTIN: And speaking of people who make a mistake, if someone should stumble into this - well-meaning to be sure, what should one say? If somebody says yeah...

ORSBORN: I mean...

MARTIN: ...Your daughter's such a hero, what should you say, Sarah, final thought?

ORSBORN: I would say, thank you. We're very proud of her. She works very hard. I don't always take an opportunity to educate people who mean well, but I would just like people to maybe think about what they say before they say it the next time.

MARTIN: Sarah Sweatt Orsborn is a writer, blogger and mom of two. Her piece is called, "My Child With a Disability is Not My Hero," for the Huffington Post. She was with us from Little Rock, Arkansas. Eliana Tardio is a mom of two and blogger for the parenting site Babble.com. She was with us from member station WGCU, which is in Fort Myers, Florida. I thank you both so much for speaking with us.